Wednesday, February 28, 2007

Daily Update - 28 February 2007

We got some news from the surgeon about Masinja's pending surgery. He's going to do another dye test, but this time it will be from the reverse end, if you know what I mean. They are going to watch him over the weekend, and will determine when/if the surgery will take place next week. Otherwise, Masinja is doing good.

Madelinja, on the other hand, has had some attitude today. She seems to be coordinating flare ups with her mother. They both got upset about the same time yesterday, and were both upset tonight at the same time. Oh, the bond between mother and daughter... I'm in serious trouble.

Well, that's all for today.


Daily Update - 27 February 2007

I got to hold Masinja up while the nurse changes his linens today. I also got to change his diaper. He weighed in at 3lbs 1oz! He's actually putting on some weight now, which is nice to see. He looked a little swollen around his face and neck, so he looked a little weird, but he's doing fine. We're still waiting on a surgery date, so hopefully everything will be coordinated soon.

Madelinja was her usual quiet self. T.M.M. got to help change her linens and diaper. She's also gaining more weight and is 2lbs 6ozs. She still looks tiny compared to her brother, but she's ok with that.

That's all from here.


P.S. On the photobucket page, there are folders above the 2 pics you see of the Twinjas. Click on the folders to see more pictures. The folders are labeled by the date the pictures were taken.

Monday, February 26, 2007

Daily Update - 26 February 2007

Masinja tried to be Harry Houdiaper again today. T.M.M. caught him with one of the flaps undone, and getting ready to undo the other. If he's this smart already, we're in some real trouble later on down the road. He had a good day today, and spent most of it resting peacefully. He opened his eyes for a while tonight, and got out of line a few times, but he's been a good boy overall.

I got to hold Madelinja, and change her diaper and linens again today. She's so tiny! She is up to 2lbs 4ozs now, so she's actually starting to gain a little more weight. She still has her ostomies and they're working like they're supposed to, so that's good. Masinja is 2lbs 12ozs, just in case I forget to type it later.

We still don't have a firm date on Masinja's surgery. The doc and surgeon are still debating on what's going to happen with that. I hope they make a decision soon, because I'd like it to be resolved so we can start feeding them both.

Madelinja's breathing tube was making funny noises tonight, but it was because she's starting to outgrow the size tube she currently has. The tube was making little squeaking sounds when she was breathing out, but her vitals looked fine, so we'll see if the doc re-intubates her tomorrow.

Well, that's all that I can remember for now.


Daily Update - 25 February 2007

Madelinja's brain drain was tapped today. The doc took 23cc's of fluid. She's started having more attitude after the procedure, so we're starting to think there's a correlation between her draining and her fits. They put her on a little bit of sedative to keep her from becoming too agitated, so she's pretty comfy now.

Masinja's stomach surgery will probably be sometime this week. The doc is pushing the surgeon to fix the perforation in his bowels, so we can start moving towards feeding him. We're still not sure exactly when it will happen, but we'll let you know ASAP.

Other than that, they seem to be doing well.


Saturday, February 24, 2007

Daily Update - 24 February 2007

Madelinja's head circumference has been the same for 2 days in a row, so the doc hasn't had to drain her brain. She's resting pretty comfortably today. Her ventilator settings have been turned down, and she's tolerating it pretty well, so that's good news, too.

Masinja has been perfecting his escape skills. He successfully removed his diaper today. It was actually sitting on the bed next to him, and the nurse had to put it back on. I think we're going to change his name to "Harry Houdiaper."

Well, that's all for today.


Daily Update - 23 February 2007

Sorry this is late.

We had some excitement last night as the power went out in the NICU, and it took them a couple of minutes to get Masinja's ventilator running again. They basically forgot to put a plug in the end of the hose. All was good afterwards. His brain drain got tapped again. They got about 6cc's of fluid, and then fresh blood, so they stopped. They were going to remove his stitches from around the drain, but he was agitated, so they decided to do it later.

Madelinja got her drain stitches out, and her hair washed. Like any good female, she loved having her hair washed, and being pampered and spoiled. I've got a long road ahead of me.

Masinja's stomach surgery is still on hold for now. We'll see how things look in a week or two, and let you know what happens.

That's all for now.


Friday, February 23, 2007

Daily Update - 22 February 2007

Well, today was a good day. It was boring, and we like that. The Twinjas are doing well, and resting pretty peacefully. They've had a few fits, but nothing major, so that's good. We'll still be waiting on when/if Masinja will have surgery on his belly, and when Madelinja will have surgery to repair hers. Other than that, nothing significant to report.

Until tomorrow.


Wednesday, February 21, 2007

Daily Update - 21 February 2007

Actually saw the surgeon today. He's not in a hurry to do surgery on either of the Twinjas right away. He wants them to get bigger first, but that's a hard path with their only nutrition being IV fluids. We'll have to see how it plays out, and see how stable they remain. He needs to put Madelinja back together, and possibly fix Masinja's perforation.

They tried to put Masinja back on the original ventilator, but he didn't like it very much. He was very uncomfortable. He will have to go back on the original ventilator before they can ween him off, so this might become interesting.

On the ventilator note, the nurses changed out both of the Twinja's breathing tubes, and took a picture of Masinja's face for us. I'll be scanning it in and putting it up on the photobucket in the next day or two, so keep an eye out.

Lastly, Madelinja is still having some attitude issues. She's still adjusting from the brain hemorrhage, and the changes of having the extra fluid drained. It usually causes issues with their vitals, but for the most part, she's doing ok. She has her moments, which usually gives us moments.

Well, that's all for today.


Tuesday, February 20, 2007

Daily Update - 20 February 2007

Yea! The Twinjas are officially 1-month-olds today!

The cranial ultrasounds yielded some positive results. Both Masinja's and Madelinja's ventricles are smaller, and it seems the fresh blood that was coming out of Masinja's drain was a result of how the reservoir is sitting, and not indicative of additional problems. These things don't mean they're out of the woods, as it will still be a while before we know if any damage was caused by the hemorrhaging.

Masinja's feeding has been postponed. The dye test showed a small leak in his bowels. The surgeon wants to wait 2 to 3 more weeks before doing anything major. They're still hoping it will heal itself. They'll be keeping a pretty close eye on his progress, and hopefully he'll still avoid surgery.

Both seem to have jaundice, and will be put on meds to help cure it. They were under the tanning lamps for a while, but it seems like the meds will be the better way to go.

Finally, even after all this stuff, they're still hanging in there and getting some rest. He was sleepy tonight, while little girl was showing some attitude. They're both good little fighters, and they're doing a good job with what they have.

That's all for tonight.


Monday, February 19, 2007

Daily Update - 19 February 2007

The Twinjas had their cranial ultrasounds today. The doctor still needs to look at them, but the technician said they look like there hasn't been further damage, so we'll have to see what the doc thinks tomorrow.

They also had their first eye exams today. The doctor said it's too early to tell if they have any problems. Our main concern is a prolonged stay on the ventilators, because too much oxygen can affect their eyesight. We'll have to find out when their next eye exam will be.

They ran dye through Masinja's belly today. It was moving a little slow, so they were going to try it several more times through the night. We're hoping that all goes well, so they can start feeding him soon. We'll let you know the results tomorrow.

Other than that, Madelinja seems to be doing well with her new vent settings. She hasn't had as many problems today. Masinja continues to rest peacefully, too.

That's all for today.


Sunday, February 18, 2007

Daily Update - 18 February 2007

Masinja had a really good day today. He's doing well on the oscillator, and hopefully will be ready to start eating this week. We'll find out about that soon, and let you know.

Madelinja was having a rough time on her vent, but the doc changed the settings so that it would automatically adjust to her breathing pattern, and she seems to be doing a lot better. She still has her little attitude, but that's fine as long as she keeps fighting.

They drained another 15cc's from her brain reservoir today, but didn't drain anything from Masinja. They should both be getting the cranial ultrasounds this week, so we'll see what kind of progress they've made.

That's all for today.


Daily Update - 17 February 2007

Today was pretty boring. Masinja had a good day of rest. He didn't have any issues, and was just chilling out when we left him tonight.

Madelinja had a good day, too. T.M.M. got to give her a sponge bath, and hold her like I did last week. She was pretty excited, but sad, because we don't get to hold or touch them very much right now.

They're still planning on starting Masinja's feeding next week. We'll have to see how that goes. They're going to do a dye test to make sure his bowels are working properly before introducing food into his system. This will hopefully preempt any issues little man might have.

Well, that's it for tonight.


Friday, February 16, 2007

Daily Update - 16 February 2007

Masinja had an ok day. He was resting peacefully, and back to his old ways of trying to lay anywhere but where the nurses put him. Very squirmy. They took 11cc's off his brain today, but got fresh blood as they were pulling it up. We're not sure what the implications of this might be, but they're scheduled to have cranial ultrasounds again next week, so we'll see if things have changed a lot.

Madelinja ended up having a blood transfusion, and they took 21cc's of fluid off her brain today. She was still showing a little attitude tonight, but not too bad. She's going to be a handful when she's gets older. I'm already picking out my shotgun, so the boys better know how to low crawl.

Well, that's all for today. Until tomorrow.


Thursday, February 15, 2007

Daily Update - 15 February 2007

Today's update will be short. Masinja is status quo and boring. He had a good day and was just chilling out when we left him tonight.

Madelinja has started on some medicine that will help her generate her own red blood cells. This should keep her from having to have a lot of blood transfusions. She'll get it Monday through Friday, with Saturday and Sunday off. Other than that, she's also just chilling out.

That's all for now.


Wednesday, February 14, 2007

Daily Update - 14 February 2007

Today was uneventful. Masinja is resting pretty peacefully. His swelling has pretty much gone completely away. T.M.M. helped give him a sponge bath tonight, so that was a good bonding experience.

Madelinja has been having a not so great day. Her temper seems to be getting the best of her, and she's enjoying making the nurses a little crazy. She's calmed down though, so hopefully tonight will be quiet for her.

Finally, they weighed in today: Madelinja was 1lb 12.6ozs, and Masinja was 2lbs 5.3ozs. Our kids are porkers!

Not much else to report. Boring is good. We like boring.


Tuesday, February 13, 2007

Daily Update - 13 February 2007

Masinja's swelling has gone down a lot. He's almost looking normal again, which is nice. He still has some puffiness, but he should be ok in another day or two. He's still on the oscillator, and will probably be on that for a while. We'll see how his lung recovers, and that will determine if he returns to the other ventilator or not.

Madelinja is also doing fine. She's starting to really recognize our voices. She had her eyes wide open when I was talking to her, and she got upset when I left to go and talk to her brother. She was actually closing her eyes when I stopped talking, as if to go to sleep, but opened them right back up again when she heard my voice. I'm going to have to whisper a lot when we finally get them home, otherwise they'll never sleep.

As far as their brain drains, Masinja is doing better than Madelinja. They only got halfway done with his draining today and quit, because they only pull until a certain point. They're going to wait until Thursday to drain him again. They took another 17cc's off Madelinja, so that's 87cc's total in the last 4 days. It's still dark, so we'll see where it goes from here.

That's all for now. Talk at you again tomorrow.


Monday, February 12, 2007

Daily Update - 12 February 2007

Masinja looked a little better today. His swelling has gone down a bit, and it seems his lung is coming along well. He doesn't have to be on sedation anymore, and was resting on his tummy when we left him tonight. He still has some fighting to do, so if he keeps up the good work, he might be fine in a couple of days.

Madelinja is also doing well, although, she hasn't slept much in the last 2 days. She seems to think that she's missing something, because every time T.M.M and I go to visit, her little eyes are wide open. She also seems to get agitated now when you tell her "goodbye". She got upset tonight, and started throwing her arms and legs around when I told her I would see her again tomorrow. They both clearly recognize our voices and presence.

On a growth note, we had them both measured tonight. Masinja was 14" and Madelinja was 13.5". They've both grown in length, but Masinja still looks a lot bigger than his sister. I think it's because she has her legs curled up most of the time.

Not much else to report today. Until tomorrow.


Sunday, February 11, 2007

Daily Update - 11 February 2007

Pretty eventful day again today. Masinja's condition has only improved slightly. He's receiving another blood transfusion, and is on sedation/paralyzing medicine so he can stay calm. He's still lying on the right side with hopes his lung will drain. We're not sure of any intervention, if any, can be taken if his situation worsens, but that's something we'll have to tackle as it comes.

Madelinja was pretty spunky today. Her attitude is starting to show through, and she is definitely her "mother's daughter." She gave the doctor a fit when it was time to change her ostomy bag and get cleaned up. I had to hold Madelinja's left arm and leg down so she couldn't interfere with her maintenance. She wasn't very happy about that, and if she had a door to slam, she would have stomped down the hall and slammed it. She did calm down after that, and the doctor drained another 25cc's of fluid from her brain. It was still pretty dark, but it'll be a while before it becomes clear like it should be.

On a happy note, I did get to hold Madelinja in my hands today when the nurse changed the linens on her bed. Her diaper had leaked and T.M.M. changed it, and then the nurse changed the bedding, so T.M.M. held the vent tube and wires and I held Madelinja. It was pretty awesome and I can't wait to hold her for real. I was a little scared, because she's so tiny and fragile, but once I had her in my hands I was very happy.

Well, that's all for now. We're just waiting to see what Masinja's course of action will be. We're hoping he pulls through this lung issue in the next day. We'll let you know what happens tomorrow.


Saturday, February 10, 2007

Daily Update - 10 February 2007

Well, today was eventful. The doctor drained 20cc's of fluid from each of the Twinjas. Masinja's color was straw-like, while Madelinja's color was chocolate. That's good for him, but not too great for her. We don't know what effects this will have on both of them, so we'll have to wait and see what happens. They both have similar movements and expressions, so we're not overly worried, just don't know what to expect. Nevertheless, it's nerve-wracking.

Masinja's lungs have seemed to become an issue. He had to be removed from his ventilator and be placed on an oscillator. It's a different type of air flow that's more gentle on the lungs. His right lung was filled with fluid, so they placed him on his side so it would drain. We don't know how this will unfold, but we'll see. On a positive note, his stomach drain was removed today, so he has that going for him.

Other than her brain drain, Madelinja is doing ok today. Her ostomies looked good, and she was resting pretty peacefully. She had her eyes open, and we played peek-a-boo with her for a minute.

Finally, I've updated the picture site. The link is here for the folks who might not have gotten it yet:

That's all for now.


Friday, February 9, 2007

Daily Update - 9 February 2007

The Twinjas had their brain drains installed today. Both procedures went very smoothly. They were both resting peacefully when we visited late this evening.

Madelinja's heart murmur is still present. She had an echo cardiogram done, but we're not sure if we'll need to do her PDA procedure sooner or later. Hopefully we won't have to do it at all.

Masinja might be on the verge of abdominal surgery. His little tummy isn't quite clearing up the way the doctors would like it to. It remains to be seen what will happen with this, as the surgeon was planning on removing his stomach drain on Monday.

Last, but not least, both of the Twinjas are having possible lung issues due to being on the ventilator. They are adjusting the settings in hopes of avoiding any problems, but there are no guarantees.

It's been a pretty busy day, so I'll cut it short here. Please keep praying that we're near the end of the road for their surgeries. It's an awful lot to ask of their little bodies. They're fighters, but we have to watch out for infection, as that would be a huge setback for them.


Thursday, February 8, 2007

Daily Update - 8 February 2007

Well, the Twinjas are resting pretty peacefully today. Madelinja got her very own ostomy bag, and it's cooler than Prada.

Masinja was a little fussy through last night, but was fine today. He seems to get more agitated than his sister, but that's fine. The nurses spoil him and it makes him feel better.

Their brain drain surgeries should take place tomorrow. We'll have an update on how things went tomorrow night.

That's all the fun for today.


Wednesday, February 7, 2007

Daily Update - 7 February 2007

Madelinja and Masinja are doing fine today. The doctor has been playing with their ventilator settings to keep them comfortable. Madelinja had another blood transfusion today, too.

Tomorrow, or Friday, the Twinjas will have reservoirs put in to drain fluid off their brains. They both have experienced hemorrhaging in their brains, which is normal for their size and circumstances, so they need the reservoir to drain the extra fluid. We'll know tomorrow when the procedures will actually happen.

Madelinja's heart murmur has possibly reappeared, but we're not sure where that will lead yet. It might not be her PDA, but another issue, so we'll have to see when she gets her next echo cardiogram.

Masinja's doing fine after his PDA surgery, so that took care of the problem for him. He should be getting his drain out on Friday, so we'll see if that's clear to do after his reservoir procedure.

That's all for now.


Tuesday, February 6, 2007

Daily Update - 6 February 2007

Today was fairly uneventful. The Twinjas are resting fairly well, and not eperiencing any major difficulties.

Madelinja had her stomach drain removed today, so hopefully she is a little more comfortable. Masinja's drain is scheduled to come out in the next week or so.

They have both opened their eyes, but Masinja enjoys looking at us, then closing his eyes in disdain. Maybe he's thinking he has some dorky parents. I guess we'll see when he gets a little older.

Well, that is all for today. Another update coming tomorrow.


Monday, February 5, 2007

The first Twinja post


Here's our first post to the Twinja Chronicles. This will be our daily journal of events in the lives of Madelinja and Masinja. They have a long road of Twinja training left, but with good progress, they could be home in 3 months.

Myself, the Twinja Master, or the Twinja Master's Master, will be posting to this, so stop back often and see if you can guess which one of us is musing. We'll definitely add pictures and such, so you can see them here, or continue to go to the photobucket link I've sent you. Choose wisely.